Wednesday, May 04, 2016

Definition of anxiety

This past weekend I was listening to NPR, as I usually do in the mornings. I was half awake, only partly understanding what I heard as I cuddled with Fin and slowly woke up. Scott Simon of Weekend Edition was interviewing the author of Imagine Me Gone, a novel with a theme related to the anxiety experienced by characters. The book is by Adam Haslett.

Admittedly, I am not familiar with the book, or the author. Simon read an excerpt from the book as I rolled over to try to fall back asleep. Then, I heard a line that struck me between the eyes. It struck me so strongly that I had to get out of bed and go find paper to write it down so I wouldn’t forget it. Honestly, I can’t even remember what the excerpt was about. It was just this single line that seems to have penetrated my ears.

“Anxiety is the relentless need to escape a moment that never ends.”

Is it a definition of anxiety? I admit, I tend to lean a bit on the anxious side. It has never been a severe issue, as it is for so many, but it is there. What a perfect description. Yet, that isn’t why this line leapt out at me so.

The line, in my personal experience (I can’t speak for everyone) is also what it is like to live with a rare and chronic health issue.

We all cope differently. Some people are able to successfully somehow put their futures with HPS out of their minds when they are still healthy. I never could. A lot of people told me I shouldn’t work with HPS because it wasn’t healthy to spend so much time thinking about my disease. If not working on HPS made it possible to put it out of my mind, then perhaps there might be an argument for the strategy. 

I just couldn’t. 

It is the anxiety. It is the thing that lives in the back of the brain, a sort of low level anxiety I guess, that makes it impossible to escape from the moment that never ends. It is the moment of knowing what is in the future. It is the moment of feeling like there is a ticking time bomb living in your lungs.

Instead of trying to forget how that moment of final diagnosis changed my life, I feel empowered by working on trying to bring the ramifications of that moment to a conclusion for everyone. It isn’t a moment that has to go on forever. Pretending it isn’t there won’t make it go away. Even a lung transplant someday won’t make it go away. Transplant is really just trading one lung disease for another. The perk is that you get to live longer, and hopefully healthier.

I know there are a lot of HPSers out there living in that transformative moment. I know because they will sometimes quietly, one on one, talk to me about how they feel.

It isn’t just those of us with severe lung or bowel or bleeding issues that live day in and day out with HPS. It is also the HPSers waiting.

They are waiting for the day the doctor tells them they have fibrosis in their lungs. They are waiting for the day they have to start using oxygen. They are waiting for the day they must seek a lung transplant. It is a kind of creeping anxiety that can go barely noticed, even by those closest to you. But, for many, it is there – the moment that never seems to go away and the endless need to escape it.

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